My Angel Marshal

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I lost my son Marshal (22) almost 4 years ago from S.U.D.E.P. I have petit mal seizures myself and had never heard of this until after my loss. It has taken a long time for me to even be able to write about this without becoming so emotional, I couldn't continue writing. Now, I am determined to do whatever I can to bring awareness to this condition. I created a S.U.D.E.P. ribbon (for anyone on facebook) in the ribbons application. I now live in fear everyday, that this may happen to me as well. I know the chances are slim but, it doesn't help. My prayers are with everyone who has lost a loved one to this but, we have to do much more than just pray. We MUST get the information out. Too many people are unaware. Drs. will tell you it is rare, we know differently. Drs. say they don't want to scare patients unnecessarily but, knowledge is power.
 

dfwtexas

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I cannot to begin to imagine the heartbreak of losing a child. I am so sorry for your loss. I got diagnosed a little over 2 years ago and didn't learn about SUDEP until I joined this wonderful group.
You are right about educating people. I am so techinally challegned! Where do you find the ribbon application on facebook, I would be glad to add your ribbon and help educated people.
This is a good group of wonderful people
Jenn
 
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Thank you both for your sweet and kind thoughts. You can do a search on facebook for "Ribbons Application". You will see a bunch of different colored ribbons beside the title. Just click on it and it will take you straight to application. The S.U.D.E.P. AND Find a Cure for Epilepsy on the second page. I'm determined to get it to the first page and keep it there!!!
 

RobinN

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Truly sorry to hear about your loss. I can only imagine the pain.
Good to know you are using the tragedy to bring light to the subject.
 
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Since I, obviously, had trouble sending the web page for the S.U.D.E.P. ribbon, I changed my avatar so everyone can see it! It's a little blurry but, you can figure out what it says. Underneath, which is unseen, I wrote: Burgandy is the color of our hearts broken from the loss of our loved ones: Gold is the color of our memories we hold close like treasures.
 
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I'm now waiting for the tests and then results for my grandson. He will be having an MRI and EEG 6/29/10 and we should have the result back the same morning. A month of nerve racking anxiety until then...lol. He had a dr. appt. on Friday. The dr. said he would not give a diagnosis until he sees the test results but, he is leaning more towards seizures, especially with the family history. I got a little irrate with him and let him know all drs. should be informing patients of ALL information and possibilities with seizures. He got the message, I will be expecting complete information on my grandson's case!!! Overall tho, I did like him, so I have to give him credit.
 
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Whew...pretty good news! There were a few spikes in my gradson's eeg but, nothing to worry about. We'll just continue to keep an eye on him for any changes...hopefylly, none will occur!:bigsmile:
 
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